Well here it goes.......
I had written all the meds I take, bp meds, lipitor , allergy meds, and nexium, I had all my questions ready...
Well first he asked me what is going on., I explained all about from august 08 and on, with the opthamologist etc.,e tc., he looked at my blood work, said definately mg., but he felt after a short exam of my eyes, reflexes, and some push against his hand test that it was mainly ocular at this point., but then like he said with the different muscle pains, it could be mg., but then it could be other things., he said to make sure and not to dwell on mg as I will be thinking that everything that happens is from mg., and then I will be more stressed and stress is the worst thing. He said the lipitor I am on probably isn't the best to take for a disease that could make muscles week., but then, I have to keep my cholestral under control to live. He explained about the myasthenia crisis and advised when I get short of breath from really no exertion it is time to call him and go to the ER. Hopefully this won't happen he says but that is the worst scenerio. He is sending me for a CAT scan of my T......gland ( forget the name is it Thymus?) but anyhow you know what I mean, he wants to make sure there are no tumor's on that gland. He advised the best thing to do is adjust to the disease, live your life accordingly, use common sense ., if you are tired, rest, if your eyes are bad close them for a while., he started me on Mestonin 3 x a day ( don't know the dosage as I dropped it off at the pharmacy and they have to order it for me , I can pick it up tomorrow afternoon., and then get the test done on monday for the CAT scan and then see him again on Wednesday. It seems he feels it is mainly affecting the ocular muscles for now , but he says who Know ? it is so hard to tell., he was very honest., he says keep tract of how I feel but because I have a few bad days., try to realize there will be good days too.........the biggest thing is not to dwell on it and think every little thing is MG., but to use common sense. He kind of has a flat personality, but he did answer my questions., and it seems like he definately felt that the blood work confirmed mg., but felt any further testing at this time wasn't necessary nor was it a guarantee it would show anything., but lets take it a day at a time, take the medicine, he said it was a small dose at first and see how it works., and then take it from there. So that was that., ..
So I don't know ., For now he seems to be doing what any other neuro would , give me mestonin ( spelling)....don't know if I really liked him or not., seemed to know about the disease , he has other patients., with MG., and he is on call all the time., so..........who knows., I guess I will see what happens with the CAT scan on Monday and then I will see him Wednesday.

Well, I think that's all pretty encouraging. You have lucked out and found someone that seems very familiar with MG, has a real common sense approach to handling the disease, warned you how to recognize crisis and what to do about it, and gave you some good advise about the stress. I like the conservative approach with meds in your case with occular symptoms only, since the more drastic measures always have side affects.
I really like that he is getting you back in 2 days after your CAT, too. Some make you wait much longer for an appointment.
If I were you, from what you have said, I'd be very satisfied with how the appointment went. He's on call all the time, so that should be handy, too.

Good Job! If you can tolerate the personality, I'd say he's a keeper so far!
One thing, though. Did he say if there is anything besides Lipitor, or that you should check with your PCP to see if there is something else that would be better for a Myasthenic? I know the neuros don't like to mess with other docs Rx's, and other's don't like to mess with neuro's Rx's. Perhaps you should check with the doc that prescribed the Lipitor now that you have the MG dx and see what they say.

You're on your way! Good luck with the CT Scan on Monday!

I'm glad your appointment went okay but I can see why you have lots of questions. I have some too.

First of all, so many problems are caused for MG patients by not having ALL the appropriate testing right away, including the EMG's. Why? Because other neurologists may later question the diagnosis. Most of them see the EMG's as the "gold standard" for diagnosing MG. And the drugs people with MG take, make the antibodies disappear and the EMG's normal. So if you go to a new doctor and he sees that you only had the antibodies done, he will probably want to do a SFEMG. At that point, you'll be on who knows what drugs, have to withdraw from them for the EMG to be accurate which can make you feel really horrid and is potentially dangerous and the test may or may not be positive. So I'm an advocate for having ALL the MG tests done right away. If your antibodies are that high, chances are that your EMG will be positive, no matter what your neuro "sees" clinically.

Lipitor is a horrid drug for people with MG. It can make MG much worse. How high was your cholesterol? Was it minimally high like in the low 200's or way high like in the 400's or higher? The 200's can be adjusted with diet, etc. Get that evaluated by a primary doctor!!!

Your neuro sounds pretty good. I can put up with bland personalities if I know I have a very good doctor. As long as he is giving you the information you need and answering your questions.

You should know, in case you don't, that there is Mestinon syrup too not just the tablets. I take the syrup due to not having stomach acid (it digests better). The syrup goes to work faster too. There is the issue of carrying liquid around with you but I don't have a problem with it. And you can titrate the liquid in smaller increments than you can with the tablets, which I like. Just an FYI.

I'm glad you have an answer to what you've been suffering with. That's half the battle. I think a discussion about treatment options would be good for your next appt. Don't automatically think you have to have Prednisone. Doctors have these "algorithms" for what they give patients and in what order. Not every patient is the same so only go by what you want for yourself!

Good luck Wed.

Annie

I have been taking Lipitor for around 10 years., they gave me lipitor when my cholestral was borderline back then but I was also diagnosed with diabetes., I take no meds for diabetes my A1C is always within normal range but sometimes my glucose test is 140 to 160., but that is not often., but they say I am diabetic., they tried me on the glugophage but it made me so ill , I refused to take it since my numbers are low., but they said it would prevent it from getting worse . I take 2 blood pressure medicines and I take singulair and zyrtec for allergies. Within the past 10 years they raised the lipitor to 20 mg when my cholestral went above the borderline range. It seems like my muscle pain has only increased some recently., especially in my arms.

I told the neuro this about arm muscles hurting and arms heavy but he didn't feel it was associated to MG., he advised it would start with swallowing, etc., he felt the limbs would not hurt as when you touch some of my muscles on my upper arms they indeed hurt.

He suggested no other tests , but seemed to try to keep everything to the ocular and not generalization, like I said he did minimal strength tests 5 minutes of it. My vision is not as bad as it has been., it seems to be worse at evening time., but originally when I first noticed bad vision it was terrible., so it seems to have lessened somewhat.

Maybe all these aches and pains in my arms are from Lipitor? I am thinking of going off of it till I see my GP the beginning of May., I get my blood work for my GP this friday. And then the tests for the Neuro Monday and see him on Monday.

I read this one article online that kind of inferred that statins can cause mg., has anyone else heard that? Mostly everything I have been reading states it makes it worse.

What exactly is a EMG test? He didn't feel any of those were necessary as he felt the blood work was sufficient, and having my chest muscles and gland checked was the most important. I got the impression that felt every ache and pain should not be attributed to mg., and advised me not to dwell on all of this, as then you will make yourself worse.

So .........I will pick up my meds today and start taking them.

and go from there., in some ways I think I am more confused...........
Thanks for your help

Also:

If I take the mestonin ( spelling ) today and see him next wednesday., should I mention a EMG test? Could I have it done without any affect from the drug then? Who performs the test? and What exactly is it?

EMG is a Electromyography. It's uncomfortable, but not really painful generally. Here's a link that explains:

http://en.wikipedia.org/wiki/Electromyography

Through a repetitive nerve stimulation test, they can detect how quickly a muscle fatigues. It is measured as a decrement in response to the electrical stimulation of the muscle. They will stimulate the muscle, recording it's response, have you "exercise the muscle" then stimulate it again, then stimulate it a third time allowing a brief rest period between the sets. On me, the muscle at the wrist only shows a 6% decrement - not enough to dx MG, but the trap muscle in my shoulder and back show a 76% decrement, and the facial muscle showed a 23%. I believe anything over 10% is considered a high enough decrement to demonstrate MG. Generally, for the RNS they should test 3 areas, and choose both proximal (close to the body trunk, like shoulder or thigh) and distal (farther away from the trunk, like hand).

Interestingly, and as Annie pointed out, you don't necessarily have to be aware of the weakness in a muscle for it to show the decrement. I have a neighbor that went in due to ocular problems. When they performed the RNS (repetitive nerve stim) on him, they found weakness in his legs that he hadn't realized.

Mestinon has a very short half life, so if you are off it for at least 24 hours prior to an EMG it shouldn't interfere with the test. The test is normally performed by the neuros themselves and most have the equipment in office.

Hope this helps you to understand! There is so much to learn when you first get a diagnosis. You may want to hone up on your googling skills so you can check things out at will! I'm getting better at it, Annie is awesome at rooting stuff out, but you can find things too.

For instance, to find the link I posted here, I just typed EMG into my search bar, then chose a link with a description that looked like what I wanted. Of course, any of us are happy to give you the information we have, but I find it interesting to go search various elements, tests, etc. myself - I'm up in the middle of the night quite often and it's a great opportunity to root around.

Best of luck to you. Feel free to let those questions fly. We're always here for you!

Thanks for your help., it seems that this neuro is content with the blood work results and really does not want to do other testing., as when I mentioned it he advised for now lets see., and seems to think it is all ocular., how can I make him do other testing if he doesn't feel it is necessary?

Hi whirlwind,
I hope this post isn't going to add to your confusion because I have a difference of opinion on whether you need the EMG now.

I like your neuros approach in your situation as you have stated it so far.

Since your troublesome sx (symptom) is ocular at this point, and he only wants to put you on Mestinon and see how well it handles your sx I don't think you are jepardizing anything by taking the wait and see approach.
As long as you pay attention to the warning he gave about crisis.

Because Mestinon is fast acting and short lived in the system, and has really very few side effects and no real long term bad effects, it is the safest and least invasive of all the treatements. If later you have other bothersome sx's come up, you can pull off the Mestinon for 24 hours, have the EMG, and get right back on it.

I disagree that you need the EMG right away. I have had to have several EMG's. Even though I have the one that I was diagnosed with, and it showed severe decrements, a new neuro always seems to want to do it over. Also, neuros often repeat an EMG to monitor you or your treatment effectiveness. So even if this guy does one now, if down the road you decide to change docs, or have to switch due to insurance (like I had to) or other reasons, there's no guarantee the next one will be comfortable with this guys test.

I know that just after getting a diagnosis on any disease, we tend to worry that there's more to it. But really, if you don't have any other bothersome symptoms I believe in letting it ride like your neuro said. You can truly drive yourself crazy worrying what all this or any disease is doing. The bottom line in my opinion is that an EMG isn't going to change the course of the disease or your treatment at this time. I look at this kind of like any illness. If I have sneezing, cough and watery eyes I assume it's a cold and take the minimum meds I can to help me cope. If it changes and I start having more severe symptoms like fever, chills, sinus pain, chest pain - then I go to the doctor to see if something more needs to be checked. I don't go to the doctor asking for an Xray until it appears to be something more than a cold.

At this time, you have ocular symptoms and some arm pain that may or may not be MG related. If mestinon takes care of it, that will be best for you. If it doesn't take care of the problem and the problems spread or worsen, you can get further testing.

What I think this comes down to is if you trust your neuro. It's hard to figure out at first. It takes time to develop the trust, but part of it is personality types. I am good with a more conservative approach. Some people need the more aggressive approach to feel comfortable.

I wish I had joined a forum like this long ago. 14 years of beating my head against a wall, trying to figure out what was best and having no one with experience with the disease to talk to made it more diffiucult that it had to be. Here, you can get the different opions from real people that have varying degrees of the disease, have dealt with progression or other factors and use that to help guide you. In some ways it may add to the confusion, but I think when you find your "type" you will be able to evaluate all the information to make decisions that are best for you!

That's my hope anyway!

Keep posting, asking questions, whatever!

Becky,
You are so right., I a sooooooooo confused at the present time., it is like I want all the answers right this minute and why does this hurt is this mg, is that mg., what tests will show what and on and on and on., (I guess that is why I have the nickname whirlwind lololol)., I am going to stay with this Dr. for now I will have my cat scan on Monday and see him on Wednesday, and mayber have some other questions for him., get my medicine today and start taking it and go from there. I agree his is a conservative approach., and I think for right now I need to just settle myself down and take one step at a time., like you said .......so thank you......and thanks to everyone., Thank goodness for this sight.

Nancy:

Whirlwind, It is your right to do whatever it is you want to! If you don't want an EMG then don't ask for one. If you feel comfortable with this neuro, than stick with him!

I wasn't trying to change your mind. I was trying to show you what "could" happen if you don't have all the MG tests right away. They can always do an EMG later but, like I said, then you would have to go off of drugs for it to be accurate.

If you get worse in the next few months, etc., then they may have to put you on more drugs. Then withdrawing from those drugs to do an EMG would be difficult if not dangerous. Some neuros argue that if your MG is bad that you don't have to be off of drugs before you have one. The people I know with MG who have had an EMG or SFEMG while on drugs have had a negative one. Then they go off and it is positive.

The good neurologists I have known also like to know what your "baseline" EMG is, even if it isn't positive. It's just as important to know where you've been with MG as it is to know where you are when you are worse.

Along those same lines, it is also important to be evaluated by a pulmonologist. They are the ones who can monitor your breathing if it does get worse. Again, knowing what "good" baseline breathing tests are for you will help them to compare when you get worse.

As for every little ache and pain being MG, it may or may not be. When I started feeling tired in 1997 to 1999, MG wasn't even in the picture yet. It turns out that I had both MG and a vitamin B12 deficiency. The B12 def. was treated but then I was still weak and short of breath. So you can have more than one thing going on at a time. I'm not saying this so you'll think you have more than one thing going on. I'm saying it so that you won't attribute every new symptom to MG, just "in case" something new is going on.

DO NOT stop a drug without talking to a doctor first, especially not Lipitor. A discussion is warranted, however, now that you have MG. It can make MG worse. There are ways to go off drugs, if that is what your doctor recommends, that are slow and won't be abrupt/give you side effects as much.

If you haven't spoken to an endocrinologist about your diabetes, then you should. They might be able to get you off of meds by diet and/or mild exercise. That may also reduce your cholesterol level.

While I disagree with Becky on this one about having ALL the MG tests right away, it is YOUR decision to make with your doctor. I have just been through too much, seen too much and know how doctors can go back and forth on a diagnosis if you don't have "all" the evidence (i.e., if you see a new neurologist at some point).

Just try to relax, take this one step at a time and learn as much as you can! You'll be fine. It's very overwhelming to have a new disease and it's going to take some time to get used to it. Give yourself a break!

Annie